The National Spina Bifida Patient Registry: Past, present, and future

Issue title: Spina Bifida

Guest editors: Timothy Brei and Amy Houtrow

Article type: Research Article

Authors: Thibadeau, Judy

Affiliations: Centers for Disease Control and Prevention, 4770 Buford Highway, Atlanta, GA 30341, USA | Tel.: +1 404 498 3559; Fax: +1 770 488 0270; E-mail: Csn2@cdc.gov

Abstract: “The National Spina Bifida Patient Registry: Past, Present, and Future” was presented at the Spina Bifida World Congress, March 17, 2017, San Diego, California. This commentary provides a summary of registry activities including the reason for development, a description of the clinic participants and their patients who are participating, analytic works and publications. Two specific efforts that are related to the work of the registry, a urologic protocol to preserve renal function for newborns and young children, and a skin breakdown prevention bundle developed and implemented in registry clinics, are highlighted.

Keywords: Spina bifida, patient registry, interventions, outcomes

DOI: 10.3233/PRM-170463

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 10, no. 3-4, pp. 205-210, 2017